The Day the Air Changed

"I’m not leaving this hospital without the same kid I came in with."

In this episode, Courtney takes us back to the "shatter point". The day a routine hospital stay for RSV turned into a race for Ryder’s life. From the silent shock of sitting on a cold hospital floor to the experimental "last chance" treatment that required a 24-hour human watcher, this is the raw history of Ryder’s journey.

Courtney discusses the terrifying sounds of the PICU that still trigger medical PTSD years later and the moment they realized "managing" Ryder’s rare lung disease (PIBO) was no longer enough. If you’ve ever sat in a hospital chair and listened to the alarms, this episode is a reminder that you are seen, you are heard, and you are not alone.

In this episode, we discuss:

• The moment "fine" turned into intubation 
• The reality of medical trauma and PICU soundscapes.
• The experimental Sevoflurane treatment and the "miracle kick."
• Living with PIBO: The "cocktail straw" reality of breathing.
• The heart-wrenching decision to move toward a lung transplant.

Between Breaths is a space for families walking through pediatric lung transplant.  The fear, the strength, the grief, and the miracles.

This podcast shares personal experience and is not intended as medical advice.

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We’re in this together.

Transcript

 Hi again, I'm Courtney. In our first episode, I talked about the space between breaths. That heavy, quiet waiting room of the soul. Today I want to take you back to where the space began for us. Before the transplant list. Before Houston, before oxygen tanks and machines. There was just a baby. A strong, happy, healthy seeming baby boy named Ryder. If you're a parent of a medically complex child, you know there is a before and an after. There is the life you thought you were living and the life that started the moment a Doctor Walked in and didn't quite look you in the eye. Today I'm sharing Ryder's before and the storm that changed everything. Writers twelve, now a sixth grader navigating the chaos of middle school. He loves TikTok. He's discovering sports. He's loud and funny and stubborn in the best ways. But at sixteen months old, he was just a toddler learning to walk. He had had RSV once before as an infant. A few days in the hospital. Scary, yes. But he bounced back. We thought that was it. We thought we had cleared the hurdle. Then came the second bout. I remember the call from daycare. He's lethargic. He's not himself. And as a mom, you have this internal GPS. Sometimes it whispers, sometimes it screams. And this time it was screaming. We were admitted to Children's Health Plano. We'd been there before. It felt familiar. Almost routine. He even seemed to be doing okay. I remember telling everyone, go home. I've got this. We're fine. But in a pediatric ward, fine can disappear in a heartbeat. Then the alarm started. Not the soft little reposition. The probe beeps. The real ones. The kind that makes your blood turn to ice. Before I could process what was even happening. The room filled with people and doctors and nurses. They rushed me out. They said they had to intubate him. They said he wasn't breathing. His organs were starting to fail. And I found myself in the hallway. And then on the floor, just sitting there alone in the middle of a hospital corridor. I didn't cry. I didn't even speak. I just sat there. A social worker tried to come and talk to me, but I was in total shock. I didn't know what organ failure meant. I didn't understand mechanical ventilation. I was just a mom sitting on a cold hospital floor. Plano said they couldn't hold him. We needed more than they could give him. They discussed care flighting him to Children's Dallas, and later, the researcher in me learned that care flights can cost one thousand dollars a minute. But that night money didn't exist. Only time did. And as it turned out, the ambulance would get him there faster. So we raced to Dallas. I had to make the calls. I called his dad. I called my mom. That is a special kind of torture. Telling people that the world might be ending while having no answers to any other questions. What happened? I don't know. Is it going to be okay? I don't know. When we got settled in the PICU in Dallas, they told me something I hated to hear. His body needs time. The machine was breathing for him, but he wasn't improving. We were stuck. So the team got creative. They brought in Heliox. Imagine giant tanks of helium and oxygen that towered over the room. The idea was that the helium being lighter might slip past the inflammation and hopefully open up his lungs. So we waited Two days. Nothing. That's when they sat us down and said, we're going to try something new called Sevoflurane. Now, this medicine isn't new. It's an anesthesia gas used in surgery, but it also has a side effect. It forces airways to relax bronchial dilation. And that's exactly what we needed. But there was a catch. They hadn't used it like this before. Not for this long. And not on toddler this small. So I handed me the papers. You know, the papers. The ones that list death and brain damage as possibilities. I signed them because the alternative was losing him anyway. Then they will. Then this massive machine was covered in dials and blinking lights. And then came what I'm going to call them as the watcher, because someone had to sit in that room and stare at that machine every second of every day. They never left. When one needed a break, another person would walk in, sit down and just watch twenty four hours a day. They never stopped watching. But here's something people don't tell you about hospitals. They aren't quiet. The sounds in that PICU You still live in my body. It wasn't just Ryder's machine. It was alarms down the hall. It was babies crying through the night. It was the parents making end of life decisions in the next room. And I heard it all for weeks. Those sounds stay in your bones to this day. Certain beeps, certain smells will take me right back. So a few days passed and finally the number started to move. It was working, but not without a cost. Ryder developed a blood clot in his left leg, something he still sees a hematologist to for this day. And even though his lungs were opening, they brought a neurologist in and the neurologist warned us he might never be the same. I remember the fire in my chest when I told her, I am not leaving this hospital without the same kid I came in with. The next day she came in to check his reflexes. She tapped his knee and Ryder kicked. It wasn't just a reflex. It was a message. He was still there. His eyes were vacant for a while. He didn't look at me like he knew me. And that scared me more than anything. But in pure Ryder fashion, he fought his way back. He learned to walk again. He learned to talk again. But the storm left a permanent mark. Post-infectious bronchiolitis. Obliterans. Pibo. The tiny branches in his lungs were permanently scarred and narrowed. That was the gift. Imagine breathing through a cocktail straw while everyone else has a megaphone. Our life became survival four inhalers, twice daily nebulizer treatments, a CPT vest that shakes the mucus loose. We did that twice a day, sometimes more injections twice a month to help with his immune system. Endless appointments. He never really got better. We just learned how to manage. By twenty twenty three, the management had stopped working. Viruses came faster and stronger. Hospitals. They lasted way longer. You could see the work of breathing in his chest increase. His reserves were gone. Now we love our pulmonologist, Doctor Rao. She is a mom first. So when she called and said, Courtney, I think it's time to consider lung transplant. It felt like a swear word. It was terrifying. But then we started imagining something different. No oxygen tanks? No. Twice daily. vest treatments? No tight chest every time he tried to run. There are only a handful of pediatric lung transplant centers in the country. While adults have sixty four, Texas Children's in Houston is one of a handful. And they're the top. So thank God they were four hours away by car. We went for evaluation nineteen tests in one week cardiology, psychology, imaging, blood work, just to name a few. They weren't just asking if he could survive the surgery. They were asking if he could thrive afterward. So after the medical Review board met right before Thanksgiving, the call came and he was approved. That moment, everything changed. To be listed, you have to live within an hour of the hospital, at least for pediatric lung transplants. So Ryder and I moved to Houston. My husband and our younger son stayed in Dallas. Extra rent split families, controlled chaos. That was our life. So we packed up our lives. I kept thinking back to that PICU To those alarms. To the sound that once broke me. We fought through that storm. So one day the only sound Ryder would hear was his own breath. Clear, deep and free. So if you're sitting on a hospital floor tonight, if the alarm still echo in your ears later, you're not dramatic. You're not weak. You survived something traumatic. And I see you. Next episode. I'll share what it's like to say goodbye to a home. To our home. To save his life. The big move to Houston. I'm Courtney, and I'm really glad you're here